Thursday, August 22, 2013

Thankful Thursday: Paradise Bakery & New Music

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for two healthy legs. As I posted on Monday, I ran a half marathon on Sunday. There was a man on the bus to the start of the race who I overheard talking. He told the woman next to him that he has done several half marathons, "some in my chair, and some with my cane," he said. I sat there feeling so blessed. I was getting caught up in what time I would get, while this guy was going to do the whole thing with a cane, like the freakin' man! Several times during the race, when I felt my legs dragging or my knee hurting, I stopped and thanked God that I had two healthy legs carrying me.

I'm thankful for my friend at Paradise Bakery. I've switched my coffee drinking alliance from Starbucks to Paradise Bakery for a myriad of reasons. But one big one is the sweet cashier. She is the cheery face I see every morning between 6 and 7. I look forward to hearing her tell me a story from the morning. She gives Mckenna the sweetest smile (and sometimes cookies) if I have Mckenna with me. She works so hard and is so sweet, and I look forward to telling her "don't work too hard today," as I leave. I wait for her laughing response before I walk out the door. I'm so thankful to start my day that way every day.

I'm thankful for my parents. I'm always thankful for them, but I am especially thankful for that offering to watch Mckenna this last weekend for Ronnie and I to have a weekend kid-free. I was blessed to have them raise me, and I'm doubly blessed to have them help us raise Mckenna. She will learn more from those two than I could dream to teach her.

Ronnie's List:

I'm thankful for new music. I've been trying to discover new music/artists in two different genres of music recently and I'm liking what I've been finding. I've been really into country music and Christian rap lately. I've always been into rap, but not Christian rap until recently. As a teen, I thought the beats and lyrics of Christian rappers were pretty corny. Now that I'm older and have moved away from secular rap (got tired of the subject matter and the language used), it's been refreshing to find that Christian rap is really good!!

I'm thankful for cloudy days. At a certain point during the summer in Arizona, it hits a time when you simply cannot plan on doing outdoor activities after a certain time in the morning. Well yesterday, given the overcast day, Mckenna and I were able to hit up the park later than normal and thoroughly enjoyed ourselves.

I'm thankful for text messaging. It's crazy how easy text messaging makes communication among family and friends. It's also awesome to be able to send photos and videos to family members who aren't on FB and want to keep up with Mckenna :) 

Wednesday, August 21, 2013

It's Good, but It's Not THAT Good

I've heard a lot of different reactions to my blog a few weeks back about the clinical trial I'm currently on which will remain nameless. One particular reaction or thought that I wanted to address goes some like this,

"Oh, that's awesome!! I can't wait until it's available because I hate CF and I hate treatments."

I guess I'll just be the one to put it out there - You can take any med currently being studied in the pipeline, and if approved, it will still not take CF away. Now this can mean different things to different people. Obviously, there will be people who get on the right "miracle" drug and it totally flips their life upside down and they start living as though CF didn't exist. I have a feeling that will be rare.

I think it's safe to say that most of us will still feel some if not all the effects of CF daily, but hopefully, less often and to a lesser degree. Many of us will still have to do treatments if we want to be the best version of ourselves.

Case in point: Today's workout was extremely hard and I was dragging booty the entire class. It was hard to catch my breath. I felt low on energy. I was doing more resting than usual and I was light-headed most of the class.

I thought for a second, "Where are you now _______ (name of study drug)?" You see, just because I've had fantastic results from the drug, or the placebo, doesn't mean that CF, or in most cases, just regular life and human reactions, go bye-bye.

I got to bed later than normal yesterday. I didn't sleep as well. I ran/walked 4 miles yesterday and I'm pretty sure my legs remembered. I ate like a 20 year-old college student this past weekend. I'm sure I could have given better effort during my treatments while in San Diego. I was out of my regular routine for 3 days. I think it just all added up.

Here's my point, no matter what drug comes out next, it won't change the fact that we're going to have to work hard. We're still going to have to make good decisions and treat our bodies with respect. The hope of course is that when we do screw up (as I am king at this) the penalty to pay maybe won't be so steep. Maybe, and Lord willing, the next generation will have no clue what "our CF" feels like. All of this of course is only speculation.

The last thing we can afford to do is wait on a med that may or may not be a "game changer". We all need to keep our nose to the grindstone and kick some CF booty each and everyday. This looks like doing our treatments, living an active lifestyle and putting our health first. If we can do that, there is no doubt that we will be the best version of ourself.

I'll leave you with this quote from the great Larry Bird which I think nicely ties up this blog with a nice ribbon. He said, "I find that the harder I work, the luckier I get."

Couldn't have said it better myself.

Tuesday, August 20, 2013

Increase from Exercise?

A question that I received lately that I know must be a common thought or question on the minds of others:
Ronnie, I wanted to ask what your pft range is or more specifically how much has it changed with exercise and how long did it (or has it taken) for you to see improvement?

I am currently at 30-35 percent and on 1-2L O2 24/7 I have lost about 10-15 percent over the past 7 years. In that time period the highest I was able to reach was 49.something, well almost 50%. I was hospitalized in June of 2009, my first in an 8 year period somewhere at 45%, however, can't give exact because records are stored since our move. After that hospitalization I cultured b cepacia, treated aggressively in Oct09. It took until August 2011 before cultures were clear. Anyhow, I've just started back at bicycling. I haven't participated in sports for 20 years (last softball season 1993). My main reason for having to quit was major hemoptysis. My husband and I have been in St. Augustine for a year and I truly believe that the salt-air is what keeps my lungs from episodes. 
So...after my last hospitalization in Oct. 2012,I was able to gain the 12% back I had lost in Sept., but it took 3 months. Since my last clinic, I've been riding every other day 30-40 minutes. A total of 9 weeks. So...the big test will be this coming Wed. clinic to see any change. Hoping and praying so...I want to get back to as close to 50% as possible. Lord willing with His help, I will.  Sorry so long and not sure how much you were familiar with my history, so I apologize if I had mentioned any of the details previously.  
Thanks, In Him, Laurie 
ps-if you'd rather not share I understand, just find it hard to find other Cfers that still have their original lungs! And if you did get a transplant, then I didn't catch it in your posts.
Thanks for sharing some background Laurie. (As a side note, Mandi's grammy lives in St. Augustine.)

As far as my PFT history, you can see much of it here:

I have not had a transplant.

It took about 18 months of working out everyday and doing 4 treatment sets a day no matter what for me to see "real" improvement. And by that I mean setting a new baseline and bringing my range closer together instead of further apart. That's continued to improve over the last 4 years.

I also have bouts of hemoptysis and it's one of those things that's always in the back of my mind. However, I'd rather "bleed out" trying to take care of myself, than slowly "commit suicide" by doing nothing (just how I think about it).

Your next PFTs may not show all of the hard work you've put in. The numbers will come, but they usually trail the effort. How are you feeling? Right now, that's what's most important. We always want to be in a position in which we can give our best. If we can't give our best, then we need to do what we need to do to get back into that position (for me, it's often a hospital stay).

Just keep your nose to the grindstone no matter the numbers. Our numbers can't dictate our effort, only we can, and should, do that.
Thanks, Ronnie for your insight and getting back to me. I am with you on not focusing on the numbers. I feel sooooo much better and I am just so grateful that I am able to get back into riding. I've had more junk, as of late, but it makes me wonder if the cycling is finally causing it to "rise". Which then I say...Good riddance!! Just to also add that the years from 2001 to 2008, I opted for "natural remedies" that kept my lungs clear or helped me through a particular illness. 
I also need to start in again with chiropractic care, it has always helped me to not be so tight from coughing and such. I've felt Cayston has helped me the most since my last hospitalization, but I am finding a slight ringing in my ears once I've done my neb this time around. Which is a bummer and something I will discuss with the Drs. this week at clinic.
I'm so happy to hear that your feeling soooooo good. That's what it's all about!! If you keep working hard, that won't change and your numbers will most likely catch up.

Monday, August 19, 2013

"I'm NOT a runner"

...but I run.

My family will tell you, I was not a born runner. My parents both run. My brother runs. My brother did cross country and track in middle school and high school. My family would go for family runs when I was growing up. Me? Oh I didn't go because I was content to sit on the couch. I wasn't a "runner" (I thought), so I didn't go. I have bad knees, that got worse when I ran a lot. I got side cramps so bad that it just wasn't fun. I could only run so fast because well, I'm 5'2" on a good day, which makes for some short strides. In my head, I just was the odd man out in my running family. I was ok with that...

...until I wasn't ok with that anymore.

When I got to college I realized I needed to do something to get exercise. I decided to give running another shot because, well, that's "what adults do to stay in shape" (thank you to my parents for modeling some form of exercise that adults do to stay in shape!) So I started running. My knees still gave me trouble if I picked up my mileage too fast. I got side cramps, until I ran through them and they started lasting shorter and shorter periods until I just didn't get them anymore. I learned it didn't matter how fast I ran, as long as I ran. The more I just ran, the faster I became.

Running became my outlet in college. I was a giant stress ball in college (...ok maybe I still am), but when I was running, I would feel free from the reality of school. My all time favorite thing to do was to run in the fall and winter, when the air was crisp, snow on the ground or leaves changing color. I would close my eyes (with the exception of a tiny sliver just to see the step or two ahead of me). The air would be cold, but the sun would be on my face. The peace and beauty on those runs made me fall in love with the sport.

I am now a sporadic runner. I go through periods where I run a lot. And periods where I'm doing other forms of exercise. But I always try to stay in good enough shape to be able to go out for a 3-4 mile run from time to time, even when I'm not in one of my running phases. As some of you maybe read, in January and February of this year I ran two half marathons without training. They went well. And I absolutely LOVE the environment of a race.

I decided a couple weeks ago to run another half marathon. My parents offered to take Mckenna for a weekend, so Ronnie and I could get away. So I found a race in San Diego...figured I could double-dip, a weekend away and a race. I have been working out 6 days a week doing our HIIT classes, but I haven't really been running, with the exception of a few long runs while on vacation, and a couple short ones here and there. I was a little nervous about how it would go. The two I did earlier this year I hadn't trained, but my mom and I went into them planning to run/walk them, and we did really well. So that upped the pressure for this one. I couldn't do WORSE (thank you, ego, for that pressure). I mentally wanted to break 2 hours. I had come close each half I had done in the past (2:09, 2:04, 2:03). But I didn't know if it was doable.

Well come race day, I let my pride and mind carry me. I felt good after the first mile or two, so I sped up. I started a little faster than I had planned, but decided to go for it. "It's just 2 hours," I thought to myself. "You can stand a lot of tiredness and pain for just 2 hours." So I pushed. I felt surprisingly awesome. I finished in 1:51:02. I was shocked. I never thought I could do it. I'm not a runner.

What's the point of my story? It's that runners are rarely born. Runners are made. If you told my parents 10 years ago that I'd run 3 half marathons in a year, by choice, they would have laughed at you. If you told me I'd love running 13.1 miles, I would have laughed at you. It's never too late to take up a sport. Runners aren't some specific group of people with a special gift. Runners are people who lace up their sneakers and hit the pavement, regardless of speed, distance, or skill.

I'll leave you with some pictures from the race...Look at them, and then...GO RUN, you runner you!

 About 6 miles in, I was just happy to see a face I recognized!

 I'm in all ninja.

Right after getting back to the car...That's my "I'll send my parents a picture, but who can take a serious self portrait?" face!
Back at the room post race - who has two index fingers and ran a half under 2 hours? This girl!

Because who can take a lot of serious pictures? Not me!

For anyone that cares - this is my race according to MyRunKeeper (you always run longer than just 13.1 in a half since you are weaving around people, etc. and 13.1 is the shortest possible distance on the course)

For anyone who cares - my splits. In case you're wondering why mile 9 was so fast...I thought it was mile 11. Talk about a major buzzkill when I realized I was just at 9 vs. 11.